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by beetree on 20 April 2012 - 14:04
Good then, you know something. The most important question that needs to be answered is, why was the funding discontinued? What were the terms of the funding if any? Who were the funders and who was the name on the check? Also, if I am correct, we are talking about $45K over a two year period, as the original and only funding?
I would like the correct answers, but only if you understand I need them to HELP.
I would like the correct answers, but only if you understand I need them to HELP.
by hexe on 20 April 2012 - 20:04
beetree, I believe that the information you're asking flygirl for would be best discussed via private messaging between the two of you. The politics of academic finance, not to mention the politics of scientific research in and of itself ASIDE from the financial part of it, do not lend themselves to examination in a forum such as this. It goes without saying that all of it involves ego, justified and unjustified pride in accomplishments both large and miniscule, notoriety, job security, potential landmines in the form of pharmaceutical, chemical, pet food and supply and hundreds of other companies...and the risk of putting a foot wrong by discussing it here is far too great, IMO. Discretion is, as you surely must know from your own experiences in the fundraising biz (based on the tone of your posts in this thread), of UTMOST importance, and PDB forums and the Interwebs in general are anything BUT.
I will postulate something for all parties to consider: It is my belief that there is more than one degenerative neurologic disorder that occurs in GSDs. It is my observation that the condition generally referred to as DM which appears in the last few years of a senior dog's life--where this is NO evidence of anything amiss with the animal until it's 10 years of age or greater--is not necessarily the same condition that begins to manifest itself in dogs as young as 4 years of age, despite the similarities in the clinical signs. I firmly believe that Dr. Coates' work should continue, and the testing continue to be done and the long-term outcomes documented; but I just as strongly believe that the work done at UofFL by Dr. Clemmons and his group should be fully funded as well, and should continue, and the Flash test should also continue being used and the long term outcomes also tracked and documented.
I've supported Dr. Coates' work on the SOD-1 mutation, and I have supported Dr. Clemmons work from the time I became aware of it (which was 1995)--and I'll continue to do so, though I must admit that I was not aware Dr. Clemmons was still working on the disorder, and now that I do know that, I will resume my financial support of that work. He was there for GSD owners when no one else was even remotely interested in finding out anything about the disorder at all--not the cause of it, nor any ways to stop or slow the progression, or even identify palliative efforts that would be helpful to the patient and the owner. That the breed community abandoned him and his work is shameful, and a situation that needs to be rectified.
And yes, I see that Marjorie's emotions have gotten the better of her, so she hasn't been able to be as effective in championing for Dr. Clemmons as in earlier years--but I can well understand why it is so personal and painful for Marjorie to see all of the funding attention, support and interest streaming into the SOD-1 mutation research: when her Jack Flash was stricken with DM, the only work being done in the disorder was that of Dr. Clemmons, and while every vet and vet school in the US and elsewhere were telling her that there was NOTHING she could do for Jack Flash save for euthanizing him, Dr. Clemmons held out not only the intangible of hope, but the very real, though admittedly experimental, treatment options. I know this because I had the same experience, albeit with a dog that was 13 years old at the onset of the problem--and I was working in a vet clinic at the time, which allowed me to reach out further than the average pet owner was capable of doing and discover the work being done at UofFL's Small Animal Neurology Department. As I've mentioned before, my old girl Jessie is one of the dogs in the video Dr. Clemmons and his crew put together to show examples of what the disorder looks like at the various stages of progression--since I was in NJ, I shot a video of my girl moving, and sent it down to Dr. Clemmons to get the best diagnosis possible without having to do something invasive like a spinal contrast study (MRIs weren't yet an option for the veterinary world, for the most part, in 1995).
It has to be difficult for Marjorie, Dr. Clemmons and all of the staff who worked on DM at UofFL to witness the vast amount of discussion that has arisen recently regarding a test for DM, as if it's the first such tool of it's nature, when they were all responsible for the very first DM test after years of investigation and trial and error and help from owner of DM-affected dogs. The reaction to the OFA-sponsored test is, to be honest, somewhat insulting to the UofFl efforts and accomplishments, and pain tends to make people react harshly when that raw nerve is touched.
I will postulate something for all parties to consider: It is my belief that there is more than one degenerative neurologic disorder that occurs in GSDs. It is my observation that the condition generally referred to as DM which appears in the last few years of a senior dog's life--where this is NO evidence of anything amiss with the animal until it's 10 years of age or greater--is not necessarily the same condition that begins to manifest itself in dogs as young as 4 years of age, despite the similarities in the clinical signs. I firmly believe that Dr. Coates' work should continue, and the testing continue to be done and the long-term outcomes documented; but I just as strongly believe that the work done at UofFL by Dr. Clemmons and his group should be fully funded as well, and should continue, and the Flash test should also continue being used and the long term outcomes also tracked and documented.
I've supported Dr. Coates' work on the SOD-1 mutation, and I have supported Dr. Clemmons work from the time I became aware of it (which was 1995)--and I'll continue to do so, though I must admit that I was not aware Dr. Clemmons was still working on the disorder, and now that I do know that, I will resume my financial support of that work. He was there for GSD owners when no one else was even remotely interested in finding out anything about the disorder at all--not the cause of it, nor any ways to stop or slow the progression, or even identify palliative efforts that would be helpful to the patient and the owner. That the breed community abandoned him and his work is shameful, and a situation that needs to be rectified.
And yes, I see that Marjorie's emotions have gotten the better of her, so she hasn't been able to be as effective in championing for Dr. Clemmons as in earlier years--but I can well understand why it is so personal and painful for Marjorie to see all of the funding attention, support and interest streaming into the SOD-1 mutation research: when her Jack Flash was stricken with DM, the only work being done in the disorder was that of Dr. Clemmons, and while every vet and vet school in the US and elsewhere were telling her that there was NOTHING she could do for Jack Flash save for euthanizing him, Dr. Clemmons held out not only the intangible of hope, but the very real, though admittedly experimental, treatment options. I know this because I had the same experience, albeit with a dog that was 13 years old at the onset of the problem--and I was working in a vet clinic at the time, which allowed me to reach out further than the average pet owner was capable of doing and discover the work being done at UofFL's Small Animal Neurology Department. As I've mentioned before, my old girl Jessie is one of the dogs in the video Dr. Clemmons and his crew put together to show examples of what the disorder looks like at the various stages of progression--since I was in NJ, I shot a video of my girl moving, and sent it down to Dr. Clemmons to get the best diagnosis possible without having to do something invasive like a spinal contrast study (MRIs weren't yet an option for the veterinary world, for the most part, in 1995).
It has to be difficult for Marjorie, Dr. Clemmons and all of the staff who worked on DM at UofFL to witness the vast amount of discussion that has arisen recently regarding a test for DM, as if it's the first such tool of it's nature, when they were all responsible for the very first DM test after years of investigation and trial and error and help from owner of DM-affected dogs. The reaction to the OFA-sponsored test is, to be honest, somewhat insulting to the UofFl efforts and accomplishments, and pain tends to make people react harshly when that raw nerve is touched.
by oregontnt2007 on 20 April 2012 - 20:04
Hexe,
Your post was done is such class that you touched my heart deeply bringing tears to my eye's with your kind an knowledgeable and IMO forgiving words. I never posted on this since it has hit me hard too, but your post was and is the best one ever on this thread.
God Bless you for your kindness on such a painful subject to those that have been wounded by their beloved pets that have or had DM. This is such an horrific part of some dog's/owner's life yet you touched on it so well. I just hope and pray it will be the end of this ugly thread.
Thank you :)
by beetree on 21 April 2012 - 00:04
| but I just as strongly believe that the work done at UofFL by Dr. Clemmons and his group should be fully funded as well |
Hexe, this is the crux of what I am trying to get everybody here to understand, that at this time, it does not appear Dr. Clemmons continues to have a viable, actual, program even happening. If someone has this information, please make it known.
You can donate all you want to Dr. Clemmons, but ask yourself, what are you donating to? Who do you write your check out to? Do you expect a tax deduction? How do you know your money is going where you think it is going? Is there any reporting to be expected back to the funders on a timely, (usually yearly basis?) .
If you don't care about any of the answers to those kinds of questions, by all means it is your money to do as you wish.
As for flygirl, sure she could respond by PM to me, like I said, I only want the correct answers, bringing it here is where "they" brought the issue out, not me. I'm just not going to let the misinformation get in the way in my quest for the truth regarding the current DM funding/research controversy, or whatever name this debate has become. At the present time, she remains silent, perhaps she doesn't actually know as much as I thought she does.
And the truth, remember that is MY goal, is, if the donor organizations did not do so anonymously, this is all information that can be had in the public domain. Something that if I was considering a donation, I would check up on. Now I have spied what could be an inconsistancy, maybe an embarrassement, or even worse, but I won't know unless Dr. Clemmons is transparent in who and how he was funded.
These are serious issues any funder would insist on being reconciled before additional funding were to happen.
There is so much more to address in your rather longish post, Hexe, and I hope to revisit, but this is enough for now.
Oh except for Oregon> nice bit of fluff and stuff, LOL I never sought the Ms. Congeniality crown. You can have it.
by oregontnt2007 on 21 April 2012 - 01:04
B said:
Oh except for Oregon> nice bit of fluff and stuff, LOL I never sought the Ms. Congeniality crown. You can have it.
I was never the prima donna ballerina B type, but if you insist? Thank you, I guess I have a Ms. Congeniality Crown
< doing the parade wave, blowing kisses & adjusting my new crown> I feel honored...... <tear> thank you! lol really B? So not me..... BOY! would my sis be so jealous since she was just 1st runner up!
Oh except for Oregon> nice bit of fluff and stuff, LOL I never sought the Ms. Congeniality crown. You can have it.
I was never the prima donna ballerina B type, but if you insist? Thank you, I guess I have a Ms. Congeniality Crown
< doing the parade wave, blowing kisses & adjusting my new crown> I feel honored...... <tear> thank you! lol really B? So not me..... BOY! would my sis be so jealous since she was just 1st runner up!
by Abby Normal on 21 April 2012 - 10:04
I do not pretend to understand the mechanics of funding and/or the politics that go with it in the UK, let alone the US, so I will leave that to Beetree and others who are clearly very knowledgeable on that front.
Hexe, the rest of your post reflects very well my thoughts on how research on every level should continue, and I agree it is a dreadful shame that Dr Clemmons work was halted, as he was the only light and hope for some in the beginning. Even now, in terms of 'treatment' he is the only person ever to have offered anything to DM dogs and their owners.
What has bothered me and still does is why he no longer has an active website, nor it is apparent that he still has an active DM research program. I said it earlier, and you obviously thought the same:
I must admit that I was not aware Dr. Clemmons was still working on the disorder.
How can anyone support any research that they are unaware of ? This seems to be a gaping hole that needs to be rectified somehow. I wonder if it is possible that Dr Clemmons is continuing his research as a 'private' project?
It is not beyond the realm of possibility that different paths of research will identify separate elements that can ultimately be brought together to win the battle against DM. We need them all to continue.
Hexe, the rest of your post reflects very well my thoughts on how research on every level should continue, and I agree it is a dreadful shame that Dr Clemmons work was halted, as he was the only light and hope for some in the beginning. Even now, in terms of 'treatment' he is the only person ever to have offered anything to DM dogs and their owners.
What has bothered me and still does is why he no longer has an active website, nor it is apparent that he still has an active DM research program. I said it earlier, and you obviously thought the same:
I must admit that I was not aware Dr. Clemmons was still working on the disorder.
How can anyone support any research that they are unaware of ? This seems to be a gaping hole that needs to be rectified somehow. I wonder if it is possible that Dr Clemmons is continuing his research as a 'private' project?
It is not beyond the realm of possibility that different paths of research will identify separate elements that can ultimately be brought together to win the battle against DM. We need them all to continue.
by hillelunteren on 21 April 2012 - 12:04
The previous post by hexe is right on the spot, I could not agree more with all he wrote.
In my earlier post (12 April) I too stated that more research by different parties will do no harm, in fact is necessary. Also I have noticed that my request to be polite has not been followed up by everyone, regretfully.
Beetree seems to me a Dr. Coates supporter (see thread: DM information by Dr. Coates), that is her good right. But please have some respect for someone who has fought DM for so long, not a researcher, not a fundraiser but just caring.
OK, Dr. Clemmons' "private" project should somehow be more accountable. Maybe by the university? Personally I have the fullest confidence in him using donations for the DM purpose.
bhaugh: As to a MRI; as far as my knowledge goes, one cannot determine a dog to have DM by MRI. It is just being used to 'rule out' other causes.
Dr. Coates wrote: We are in the process of writing a follow up paper with information about the distribution and frequency of the mutation.
Let's just wait and see what she comes up with and judge later.
by beetree on 21 April 2012 - 12:04
I will clarify for you: I am a supporter for the truth in DM research, nothing more and nothing less. I obviously have different standards for donating my funds than some, I require due diligence that it is going to a well thought out detailed proposal for the intended research.
No where have I said anything against what Dr. Clemmons has done. It is what he apparently has not done that is creating the void, and opening up this discussion to misrepresentations or misunderstandings.
No where have I said anything against what Dr. Clemmons has done. It is what he apparently has not done that is creating the void, and opening up this discussion to misrepresentations or misunderstandings.
by hillelunteren on 21 April 2012 - 16:04
To whom it may concern.
Just for those who couldn't find the DM page of Dr. Clemmons and New Chapter (took some effort but awarded with succes):
http://dog2doc.com/neuro/DM_Web/DMofGS.htm
http://dog2doc.com/neurohp.html
by beetree on 21 April 2012 - 16:04
At least you are looking, good job. Only problem, the 1st link is dated, 1998, what I'd like to see is an update on his most recent study, the one that everyone keeps suggesting was stopped, and not by his choice.
And the other appears to be his business web page. Nothing about any ongoing current research as far as I could tell. Pretty much seems to be a summary of his perspective.
I just want you to know, if, say you or I feel compelled to send him a check for a donation, as it currently stands, if he wanted to use it for a nice steak dinner because he feels it helps him think better, then we would have to agree he is 100 percent correct and wish him "bone" appetit!
I hope that was nice enough for everybody.
And the other appears to be his business web page. Nothing about any ongoing current research as far as I could tell. Pretty much seems to be a summary of his perspective.
I just want you to know, if, say you or I feel compelled to send him a check for a donation, as it currently stands, if he wanted to use it for a nice steak dinner because he feels it helps him think better, then we would have to agree he is 100 percent correct and wish him "bone" appetit!
I hope that was nice enough for everybody.
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